Aman

[Guest guest]

Pushpa,

Being still " new " at all this, I am happy that I was able to share

some experiences with you to make things a little more positive. We

have learned (as have probably most parents) that the things doctors

say early on are just " predictions " based on " medical literature " or

past experience. Noone really knows what a child is capable of and

that leaves the door wide open for any number of possibilities. When

was born, they told us he was cortically blind and deaf. The

next day, when he was still in the NICU, we went out and got a black

and white mobile and some black and white toys and spent alot of time

early on trying to get him to track objects and focus on toys and

faces. He was retested at 3 months and his vision is fine...he was

misdiagnosed early on... As far as his hearing, he is profoundly

deaf bilaterally but since the beginning, we have used sign language

with him and he can now communicate with over 20 signs and combines

signs. He also just got a cochlear implant last month and has had

remarkable response to his new hearing. There are certainly some

issues that require ongoing work but we have learned to take things

one at a time, enjoy the smaller steps in successes and appreciate

for all that he is and has to offer us. I wish you all the best

and please keep in touch.

Barbara, mom to 14 months

[Guest guest]

Barbara, its indeed wonderful to hear that some of the doctors

predictions leave the doors wide open for a number of possibiliies, but its

good to accept the worst and be prepared and as you mentioned to take things

one at a time, enjoy the smaller steps in successes and appreciate

Aman for all that he is and has to offer us. Pushpa grandmother to Aman 8

weeks

[Guest guest]

Pushpa-

Jan's post about 's early years reminded me of something important. That

first year -- the first several sometimes -- can be very overwhelming and

confusing. Not only do the parents have to learn all the medical stuff and make

huge medical decisions, but they have to learn about the wide web of services

available, which services they need, how to approach them, etc. The whole early

intervention service system is complex. All of the decisions about which

therapy, how it's handled, who provides it, where, etc can be as overwhelming as

the medical decisions. Then you have numerous therapists each telling you " one

little thing " you should try to build into your day -- except all those little

therapy tasks plus the medical caregiving take up all your time and there's no

time to enjoy your baby.

So... if Aman's parents feel a bit overwhelmed, they will need your support.

It's so easy for parents to feel like they are not doing enough, should be doing

more, etc. Each of us can only do so much at a time. I found that I would

focus on the most important issue at the moment, sort of neglecting the others,

until it was covered and then move on to something else. And at times, I would

just take a break from thinking about any of it. Overall, Aubrie has done very

well even with my shortcomings. There's no way parents can address every issue

with all of the attention it warrants all of the time.

So... I've become quite the rambler! That explains why I'm getting nothing done

around here anymore :-)

Michele W

Aubrie's mom (4 yrs) CHaRgE and (10 yrs)

[Guest guest]

In a message dated 1/15/02 9:31:41 PM Central Standard Time,

kishorepushpa@... writes:

> he is due for a laser surgery on thursday

Pushpa, What is the laser surgery for? Has Aman's cold improved any? Has Aman

been tested for immunodeficiency?

Sorry for so many questions. Your family (little Aman) is in my thoughts and

prayers everyday!

I remember those earlier days far to well. We were very often overwhelmed

with emotions. I am very glad that you had contacts to this list early on. We

are very thankful to have been blessed with a wonderful team of

professional's [we did search]. They have given us so much support. They

helped us make decisions which we sometimes could not make on our own. They

are like family. I hope your children have been blessed in this same way.

Jan mom to (15 mo.) CHARGEr wife to

MN (USA)

[Guest guest]

Dear Jan, this is what Amans mom Poonam wrote <Aman is having the laser surgery

to make his airway more broad as it collapses sometimes and causes it to block ,

they dont know if it will work as he has other complications but they want to

try it before doing a trac on him as that is the only other thing left then>

The children live in but are now in Vancouver as Aman has been

airlifted to the hospital there, Iam still in India having my visas processed,

they havent still begun early intervention for Aman, as they are concentrating

on stabilising his breathing.Thanks for all your support and prayers, I keep

passing on all the important information to the children. Pushpa<grandma to

Aman>

[Guest guest]

Dear Pushpa & Poonam:

I hope the laser surgery went well and you can avoid the trach. I am not

familiar with the use of laser for malacia issues. I find it very

interesting, please let us know what the success is. I most sincerely hope

that it was successful.

has tracheo/laryngomalacia and she also has micrognathia (small

jaw/chin). We are very fortunate to have avoided being trached. Being

that had micrognathia her tongue fell back and obstructed her airway.

Which really complicates the malacia's? This was not caught by many docs. And

she almost got trached. We found an expert ENT who had two choices for us a

glossopexy or a trach. This ENT has never had a glossopexy fail. " With the

amount of malacia's and the amount of micrognathia that had. " We chose

to do the glossopexy. It was a very hard decision to make, but we can happily

say that it's been a success!

A brief definition of a glossopexy is-the ENT scars the tissue of the tongue

and lower lip. They then suture them together (reinforced with buttons, for

about 3 weeks or until they grow together). This doesn't allow the tongue to

fall back and obstruct her airway.

This may not benefit Aman, but if he has micrognathia as well as having

tracheo/laryngomalacia he may then be a candidate for this procedure. 's

malacia's are not on the severe end (moderate), but her micrognathia was very

severe. We are not aware of any other CHARGEr that has a glossopexy. If you

have any questions, please let me. 's glossopexy is still intact, it

however will be released within the next few months.

Bless your son with much strength and fast healing--

I don't know if Aman had tubes placed in his ears yet. If he is under

anesthesia in the near future you may want to consider it at that time.

had PT tubes placed at 2 months. This will aid in future hearing tests.

Jan mom to (15 mo.) CHARGEr wife to

MN (USA)

[Guest guest]

, good to know that is eating again,we are also all praying for his

operation to be a success. Aman was extubated yesterday but his stats started to

fall so they will try again on Monday, Pushpa<grandma to Aman 12 weeks>

[Guest guest]

Jan, thank you so much for the much needed advice, Aman has a severe laryngo

malacia, this is what AmritPoonam wrote ( when he came back, he was very

agitated for 2 hours. the laser surgery can be quite painful, as they laser away

soft tissue, and it can cause swelling, pain, etc. he is on a pain killer,

tylenol, and was administered some morphine as well to calm him down. they just

stopped the morphine as it was dropping his heart rate; morphine does that

sometimes. so he is only on pain killers for now.Poonam says he fought

restlessly and struggled quite a bit for 2 hours, but now he is settled and

sleeping)

Thanks for the advice of PT tubes while on anaesthsia, Ive mailed all the

information to my children. Also your advice on glossopexy is invaluable, Aman

does have micrognathia, infact that is what was causing obstruction to his

breathing at birth. Pushpa<grandma to Aman 12 weeks>

[Guest guest]

Jan and Pushpa,

I also find the glossopexy information interesting. The tongue can really

cause problems when it flops back.

Pushpa, please keep us updated through the weekend about Aman's

progress. It is very hard to wait, I'm sure. I am really hoping that

there was success with the laser. Airway obstruction was one of our

biggest difficulties for sure and the lack of success in treating it led to

a tracheostomy. For us the issue of tracheo-malacia was complicated with a

double aortic arch. It sounds like Aman does not have this complication

luckily. Since Jan had such good luck avoiding the tracheostomy, I am

really hoping that newer techniques are helping our kids have adequate

airways while they grow and allowing them to avoid tracheostomies sometimes.

Also, Pushpa, please let you son and daughter-in-law know that we may have

a small picnic kind of gathering in the Pacific Northwest this Summer and

since British Columbia is not all that far, perhaps they could look forward

to joining us if Aman's health allows him to travel.

Mom to Kendra, and Camille